Eleanore Vs. (Un)certain Doom

I am panicked. Okay yes, I’m always a little panicked. It comes with the job of being chronically ill. However today I am more panicked than usual.

For the average healthy human, it’s fairly easy to tell when something is wrong with your body. Doctors usually say, for example, that if you are having chest pains, neck pains, shoulder pains, and are fatigued, there may be something wrong with your heart, so you should probably head to the Emergency Room. But what exactly do you do when you have all of those symptoms on a daily basis, and one day they’re slightly worse than normal? Do you run to the Emergency Room to get checked out, or do you blow it off as a bad pain day? How can you tell the difference?

Spoiler alert: you can’t.

Many less than lovely people in my life have said that I’m dramatic, eccentric, worrisome, and other shady synonyms for “hypochondriac psychopath.” Those people fail to understand that the reason I am so worried is because I have lived through countless medical emergencies. I have endured more pain than most people my age, and I have had far too many close calls. I also have over a dozen diagnoses, and the thought of getting more troubles me. So you can’t totally blame me for my worry; well,you could, but you’d be kind of a butt.

The cause of my anxiety the last few weeks has been my nerves. I have what’s called a Facial Maloclussion, which is a genetic defect that causes the jaw to be malformed (you can read about my life with the condition here and here after!). It comes with a great deal of symptoms that I have experienced sinced I popped into existence. Side effects of a facial maloclussion include:

Constant jaw, neck, shoulder, and upper back pain

Regular migraines

My face lacking facial structure and being more elongated than it should be

A severe underbite

Crooked Teeth

Trouble breathing and eating

Trouble existing

As if that weren’t enough, every month I also get a Charley Horse… in my face. The right side of my face, the side that is more malformed, has terrible muscle spasming and tightens up. Sometimes tiny flashes of lightning also sear through my face (Pikachu has a vendetta against me apparently). The episodes normally last a week, and in the meantime, there’s not much I can do about it. The best advice I’ve been given in regards to getting through these episodes which are called TMJ (Temporomandibular Joint) spasms, is to eat soft food, put a wet, warm towel on my face, and try not to hate the world. The first two I’ve gotten good at. The second, not so much.

While I never become used to being in chronic pain, it does become my version of normal. I’ve gotten somewhat familiar with my daily pain and I know what I need to be able to function. At a certain point that is the best thing someone like me can do because while understanding the pain doesn’t heal us, in my experience, it at least makes me less nervous when I comprehend what my body is doing. I attempt to coexist with my pain because being stressed out and anxious only worsens it. In regards to my maloclussion this was all going well…until a few weeks ago. Cue the dramatic plot twist music!

Nearly a month ago I started having my usual TMJ spasms. I did all my usual treatments but it didn’t go away. I waited the standard amount of time, and thought it was odd that it was getting worse. As time went on, the pain started to travel down my neck. Today I woke up with the pain added to my right shoulder and my right arm. My face, neck, shoulders and arm all feel tightened and clenched, and that feeling is joined by sharp, shooting Pikachu pains. It isn’t the best sensation and Ibuprofen, ice, and heat don’t help. Considering I don’t have insurance, I can’t run to a doctor like I desperately want to do, so I’m left sitting here in a mental frenzy while I allow my mind to run wild with all the possible ways I may be doomed.

There’s about a 99.9 percent chance that I’m mostly fine. After minimal research I found that it’s actually incredibly common for people with maloclussions to have nerve issues as a result of the defect. While there’s still the possibility that I have some serious nerve damage, the possibility of it being from an illness I have already rather than a new one I know nothing about is oddly comforting. But of course, this morning when I Googled all the symptoms together, which I absolutely should not have done, most of the results were frightening heart issues, which always tend to scare me since my father had several of them. Internet, how could you betray me? I thought you were cool.

Last time I was in the Emergency Room for one of my infamous Vasovagal episodes, I asked the doctor how I or anyone around me could tell the difference between me passing out from being overstressed or hypotensive, and me passing out from something potentially life threatening. His reply was exactly what I had feared. “There really isn’t a way to tell, that’s why you have to come to the hospital if it happens,” I was told. He seemed genuinely concerned for my wellbeing. However, his answer sums up the main problem I have with trying to balance all of my chronic illnesses. I can never tell when I could be in serious danger.

This is why I am scared all the time. I’d be far more comfortable with my situation if there were clear signs as to when something is dangerously wrong. Again, for the average human, having your heart race like it’s revving up to drive straight out of you isn’t normal. Having shocks, tension, throbbing, and stabbing pains every second isn’t normal. Passing out isn’t normal. For me, it is, and I am overwhelmed by trying to understand it all.

I have tried tirelessly to differentiate the attributes of my illnesses, but it gets extremely tricky. Of course, this would all be somewhat alleviated by going to see a doctor, but I don’t have health insurance or much money, so my only option is the Emergency Room which is expensive and overpacked with dozens of people just like me; people who are in need a general doctor but who can’t afford it. I did thankfully get help from a low income program here, so I will be able to see a general practitioner…in two months. While I’m grateful, the thought of living with these pains for two months is driving me slightly insane.

Yesterday I was talking to my friend Bre, who I have known for exactly ten years. She herself is disabled and is one of the most brave people I know for all that she’s had to face with her health conditions. Her life is just as complex as mine, and while I wish more than anything for her to have a good life, it is nice that she is one of the few people that understands what I’m going through, doesn’t try to out-sick me, and is just altogether a fabulous person. At one point in our conversation, I told her that most days the idea that keeps me going is the fact that one day when I am far better off than I ever have been in my life, I will look back on my life and think, “wow.Things used to be so different and terrible for me, and look at me now.” To my surprise, she knew exactly what I meant, and said she thought this herself.

I then proceeded to explain that aside from the fact that being chronically ill is stressful as hell and makes me worry literally all the time, the less obvious reason I constantly fear something terrible is wrong with me is because what I want more than anything else is to make it to that day. That day when I have the medical care I need and am in the best shape of my life despite my chronic illness, when I own a little home in a place that I love, with a job that I adore just as much. I look forward to having a healthy and happy life, living with my healthy and awesome soulmate and maybe even some totally rad children . I fantasize about the day I I am significantly less fearful, sitting at my little coffee table drinking a cup a tea with those I love most saying, “look what I survived. look how bad everything used to be, and look how happy I am now. It was worth it.”

Every day of my life I spend trying to get a step closer to that day. I have to believe that regardless of what I have to fight through, I will get there. I try to think of this in positive terms, but when my pain is increased and I can’t get answers as to why, or I have new symptoms that hurt even worse that I can’t get help for, my first thought is my deepest fear; what if this prevents me from reaching that day?

This post wasn’t nearly as articulate as I had hoped, and I suppose it’s more of a rant than anything. But sometimes an emotion explosion is needed. I just keep thinking that if I don’t make it to that day in my future, what was all of this for? I’ve never been able to think of a better reason to fight on, which leads me to believe that all my suffering, tears and resilience are so that I can endure long enough to have a wondrous life that is precisely what I dream of.

As long as I get to that day, and have many similar ones after it, this suffering is worth it. And I truly believe with all my heart that even with being disabled, chronically ill, and painfully unperfected, I can still have that sort of future.

Disclaimer: I’m not a hologram or AI, I am a real live girl… I think.

We were barely 18 when we crossed collective hearts.
It was cold, but it got warm when you barely crossed my eye.
And then you turned, put out your hand,
And you asked me to dance.
I knew nothing of romance, but it was love at second sight.

I swear when I grow up, I won’t just buy you a rose.
I will buy the flower shop, and you will never be lonely.
Even if the sun stopped waking up over the fields
I will not leave, I will not leave ’till it’s our time.
So just take my hand, you know that I will never leave your side.

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Published by Sickly Stardust

Chronically ill alien space princess that likes to play video games and write about life, the universe, and everything. Composed of electricity, stardust and some guts, too. This is my adventure.
View all posts by Sickly Stardust

I’m sorry you have had to deal with illness all your life. It is not an easy life for us to live. But I am so glad that you read my post and know I feel like you do. It doesn’t make anything better, but it at the very least is a reminder that there are others out there like you, who care. ❤